My Cancer Portal y MCP Steering Group Jan 2016

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1 My Cancer Portal

2 Transforming Care After Treatment -TCAT Increased survivorship of patients with cancer Survivorship comes with a legacy Investment into detecting cancer early (DCE) Better treatments High initial investment We can improve the care of patients who have received treatment.

3 My Cancer Portal A single resource for patients and carers Co designed with patients Quality, safety and effectiveness at its core Sponsored by Macmillan Hosted by NHS Highland Collaboration of NHS/OpenBrolly/Macmillan /M Delivery April 2017 Chief Angus Watson

4 Consultation ti & Design Jan 2016 Patient & Staff panels June 2016 Beta testing July 2016 Full testing December 2016

5 My Cancer Portal Healthcare view MDT Form Treatment Summary Clinical l Dashboard HNA Form Electronic Patient Record SCIstore/Docman Patient Post or E Comms My Symptoms My Information & contact Links to other form web pages My Story Reflective writing My Cancer Portaland other media Pti Patient tview

6 Highlands & Western Isles Colorectal Cancer MDT Clients Name: Address: Responsible Consultant Dare of Birth CHI Number: GP: Practice: Current MDT Date Previous MDT Date Bowel Screening Presentation & Symptoms: Significant PMH: Specific Questions for MDT: Staging Site of Tumour Colonoscopy Adenomata CT Chest Liver Comments For rectal cancer MRI Circumferential Margin: Neoadjuvant Therapy Comments MDT Advice:

7 Surgery Liver: Peritoneum Operation performed & operative findings: Pathology T N M Nodes Involved/Sampled: Deepest level vascular Invasion: Polyp Cancer: Genetic Testing Grade: R Kikuchi SM level: Haggit level: MDT Discusssion Final Clinicopathological stage: T N M Prognosis

8 Follow Up Oncology Radiotherapy Chemotherapy Comments: Luminal surveillance: Time period: Imaging: MDT Process Complete? Clinical trial eligible? Comments P Reg: Patient Communication When:..Will speak with patient Yours sincerely Consultant GMC CONSULTANT GENERAL AND COLORECTAL SURGEON Chair and minute secretary for the MDT of the day

9 My Cancer Portal Holistic Needs Assessment Concerns checklist Living with and beyond cancer identifying your concerns Completed dby: Date: Designation Contact details: Patients Name Address CHI number This self assessment is optional, however it will help us understand the concerns and feelings you have. It will also help us identify any information and support you may need in the future. If any of the problems below have caused you concern in the past week and if you wish to discuss them with a health care professional, please tick the box. Leave the box blank if it doesn t apply to you or you don t want to discuss it now. I have questions about my diagnosis/treatment that I would like to discuss Physical concerns Practical concerns Spiritual or religious concerns Breathing difficulties Passing urine Constipation Diarrhoea Eating or appetite Indigestion Sore or dry mouth Caring responsibilities Work and education Money or housing Insurance and travel Transport or parking Contact/communication with NHS staff Loss of faith or other spiritual concern Loss of meaning or purpose of life Not being at peace with or feeling regret about the past Lifestyle or information needs Nausea or vomiting Sleep problems/nightmares Tired/exhausted or fatigued Swollen tummy or limb High temperature or fever Getting around (walking) Tingling in hands/feet Pain Hot flushes/sweating Dry, itchy or sore skin Wound care after surgery Memory or concentration Taste/Sight/hearing Speech problems My appearance Sexuality Housework or shopping Washing and dressing Preparing meals/drinks Family/relationship concerns Partner Children Other relatives/friends Emotional concerns Difficulty making plans Loss of interest/activities Unable to express feelings Anger or frustration Guilt Hopelessness Loneliness or isolation Sadness or depression Worry, fear or anxiety Support groups Complementary therapies Diet and nutrition Exercise and activity Smoking Alcohol or drugs Sun protection Hobbies Other Please mark the scale to show the overall level of concern you ve felt over the past week.

10 AW1 Patient Name Address Responsible Consultant Hospital Health Board/TRUST CHI number/nhs number Date of birth GP Name and address Tumour Site AW2 Diagnosis AW3 Cancer stage (TNM) Date of diagnosis Metastatic disease AW4 Treatment Aim AW5 Treatment completed? Appropriate for Primary Care to add to their palliative care register? AW6 AW9 Key symptoms which may require referral to specialist team: AW7 Other services currently involved Has patient been given a copy of this treatment t t summary? Summary of treatment AW8 Treatment type Completion Date Comments AW10 AW11 AW12

11 Slide 10 AW1 AW2 AW3 AW4 AW5 AW6 AW7 AW8 AW9 AW10 AW11 AW12 AW13 AW14 AW15 Demographics including patient name. CHI number. Address. GP. GP number and date of birth all pulled from PMS/SCIstore and will populate all the forms Need to decide how we log on to the whole system. Currently we log onto Formstream and we are presented with the landing page and sign in box. Suggest we keep this system and add the HNA and Treatment summary as forms that you scroll onto after the MDT form? Drop down list available on Formstream. Pre-populate from MDT form? Data available from Formstream. Staging/Site of tumour Drop down menu for all tumour types (or import directly from MDT Formstream) Currently not included in MDT Formstream. I think it should and will discuss with Jim Docherty data directly from MDT Formstream drop down. Yes/No/Uncertain Data from MDT Discussionin Formstream 'Prognosis' which is a drop down of Palliative/Curative drop down. Yes/No Data from Follow Up section in MDT form 'P-Reg' (drop down of yes/no) Free text box Free text box drop down 'yes/no' Mixture of drop down and free text. Drop down in Treatment type to include: surgery/neo adjuvant chemo-radiotherapy/ Neo adjuvant chemotherapy/ Adjuvant radiotherapy/ Adjuvant chemotherapy/ Palliative chemotherapy/ Palliative radiotherapy/ Hormonal therapy/ Immunotherapy. Completion date should be Date box to click on

12 Patient name/ CHI AW16 Possible treatment toxicities and / or late effects Required GP actions (in addition to GP Cancer Care Review) AW17 Medication prescribed from Secondary Care Secondary Care ongoing management plan Additional information including issues relating to lifestyle and support needs AW18 Referred to Macmillan Money Matters Team? Is DS1500 application applicable? Has DS 1500 been completed? Summary of information given to the patient about their cancer and future progress AW19 AW20 Name of health care professional Date AW21

13 Slide 11 AW16 AW17 AW18 AW19 AW20 AW21 AW22 AW23 AW24 pre-populate from SCI/PMS Free text box Free text box Free text box Free text box Not sure if we should leave this as a free text box for a healthcare worker to fill in. or automatically take data from the HNA boxes that have been ticked. Probably the former as an HNA may not be completed each time there is a treatment summary produced. all 'yes/no' drop down Free text Drop down box including all those with log ins for the system. Date taken from date box...or default to the date that form is accessed?

14

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16 My Cancer Portal - engagement Patient Panels Initial stage x 2 Feb/March rd panel End of Beta testing Staff Panels Initial stage x 1 Beta testing x 1 Larger test x 1 30 patient testing group 1 further panel

17 Questions?

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